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EqualandInclusiveUserInvolvementintheMentalHealthServicesinIreland
Page62
5.BarrierstoEqualandInclusiveInvolvement
5.1LackofCulturalResources–NotHavingEnoughKnowledgeto
Participate
Asdescribedabove,mentalhealthserviceusersfaceinequalityintermsofa
rangeofculturalresources. Thisisborneoutintheresultswhereparticipants
describedpotentialdifficultiesinbeingabletounderstandthediscussionin
committeemeetings.
Aparticipantinthefirstworkshopdescribed“gettingtoomuchinformation,but
notgoodinformation,notunderstandable.”Duringtheinterviews,three
participantsandtwoleadersciteddifficultiesduetonotunderstandingthe
languageofthecommitteediscussion:
“Definitely,particularly thelanguage,thelanguagewasarealproblem
whentheyweretalkingaboutCMT’s,LDL’s,allthattypeofthing…lotsof
abbreviationsandIdidn’thaveacluewhattheyweretalkingabout.”
(Maleparticipant,aged50)
“…inthatscenarioit’sveryeasyfortheprofessionals,ifyoulike,touse
languagethatexcludestheserviceuser.”
(Maleleader,aged52)
“Plus,uhm,there’salsoanintimidationfactorincommittees,whenthey’ll
betalkingallthishigh-falutin’technicalstuff,andIwon’tunderstand,you
know,Idon’thavemucheducationorwhatever.”
(Maleparticipant,aged36)
Beyondcontext-specificlanguage,lackofknowledgeofthegeneraltopicunder
discussioncanbeabarriertoparticipation. Twoparticipants,twopilot
participantsandoneleaderidentifiednotunderstandingwhatwasbeing
discussedingeneraltermsasadifficulty.
“IfeltthatIdidn’thavethesamebaselineofknowledgethatalotofthe
otherpeoplewhowereprofessionalsorpeoplewhoweremanagersof
disabilityservices-thattheyhadmoreinformation.”
(Maleleader,aged40)
“ButIthinkagoodbitofitwasovermyhead,ontheCouncil,youknowthatkind
ofaway,thelasttime,asfarasIcanremember.”
(Femaleparticipant,aged47)
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EqualandInclusiveUserInvolvementintheMentalHealthServicesinIreland
Page62
“Iparticipated,Itried
toparticipate,butIdidn’treallyknowwhatwasgoing
on.”
(Maleparticipant,aged36)
Sotoo,alackofknowledgeaboutthepolicyprocesscanbeabarrierto
participation. Aserviceuserleaderreportedthisasabarrierfromhisexperience
ofbeingonacommittee:
“BecauseIfoundalotofthetimethattheconversationkindofrevolved
aroundissuesthatsomepeoplewereveryfamiliarwithandotherpeople
hadn’tacluewhatwasgoingon. AndIoftenthinkthatpeoplewitha
disabilitysometimes,uhm,didn’tunderstand,andIincludemyselfinthat,
thekindoframificationsofrunninganorganisation,managingan
organisation,theoverallnationalpolicy,howanactandlegislationworks.”
(Maleleader,aged40)
Serviceusers,reflectingwidersocialnorms,de-valuetheirownexperiential
knowledgerelativetothevocationaltrainingofprofessionals. Apilotinterviewee
worriedthathisknowledge,whichisbaseduponexperience,wouldnotbe
aswellrespectedasothertypesofknowledge:
“Imightbenervousgoingintoameetingbutitwouldn'tbebecauseof
beingaserviceuser,itmightjustbethatImightfeeloutofmydepth.
Myexpertiseismyexperienceandthat'snotsomethingyougetadegree
in.”
(Malepilotinterviewee,aged40)
Thisviewwassharedbyanexperiencedparticipantwhoraisedconcernthatthe
basisforhisparticipationwasnotasvalidasthatofprofessionals:
“TheonlyskillIhadwasbeingaserviceuserbyexperience…That’sthe
onlyskillIhad. Whereasalltheprofessionalshadtheirmandatebybeing
expertsintheirfield.”
(Maleparticipant,aged50)
Itisimportantthatserviceusersnotbeexpectedtoaddressthislackofcontext-
specificknowledgebythemselves. Whilesomeparticipantssaidthattheywould
nothavedifficultyaskingforclarificationofterms,onepersonstatedthather
feelinglesswellintermsofhermentalstatewouldhinderherspeakinguptoask
forinformation:
“…youmightnotbewell,youmightfeeldepressedandwouldn’tbe
botheredaskingforclarificationofwhatwasbeingsaid.”
(Femaleparticipant,aged47)
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EqualandInclusiveUserInvolvementintheMentalHealthServicesinIreland
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Sotoo,aserviceuserleaderreferredtotheembarrassmentwhichsomeonemay
feelatshowingtheirlackofknowledgeinthecommitteesituation:
“Well,youeitherhavetosay,well,holdon,couldyouputthatintoplain
English,whichIhavenoproblemdoing,becauseIhavethatlevelof
confidence,butotherpeopleperhapsarefrightenedthattheywouldbe
showingthemselvesuporshowingtheirignoranceorwhatever.”
(Maleleader,aged52)
Oneparticipantlinkedtheinabilitytounderstandthelanguagewithbeinga
“token”,
“Becausereally,theywereusinglanguageonthatbasisaboutthis,that
andtheother,andtheonlythingIcouldcontributewasthatIfelt,really,
theyshouldhaveagoodcoffeeshop.”
(Maleparticipant,aged42)
Theculturalresourcesofasituation,itsculturalrepertoire,includeprofessional
technicalvocabularyrelatingtothesubjectofacommittee,suchaspracticesin
mentalhealthtreatment,rehabilitationsocialhousing. Itincludesprofessional
vocabularywithinthecontextsuchasthenamesofrelevantorganisationsand
theirremits,thenamesofrelevantprojects,thenamesandcontentand
significanceofrelevantstandardsandlegislativeinstruments. Italsoreferstothe
policyhistorywhichsetstheframeworkforthedecisionsbeingmade,e.g.
previouspolicydocumentsandstatementsbypolicymakers. Conducting
meetingsinlanguagethatnotallparticipantsunderstand,andreferringto
knowledgesthatusersdonothaveisexclusionary. Itisolatesthosewithoutthe
languageandcanmakeitimpossibleforthemtoparticipate.
5.2UnequalCulturalResources–NotUnderstandingtheRulesoftheGame
Anumberofparticipantsarticulatedadisadvantagefromnotunderstandinghow
committeesoperate. Apilotintervieweesuggestedthataserviceuserwouldfeel
anxiousuntilheorshehad‘gottenusedto’thestructuresofmeetings.
Aparticipantreferredtohowtheprofessionalsonthecommitteeare“usedto
everything…usedtothesemeetings.” Learningaboutcommitteerulesand
procedureswasoneoftheprioritiesidentifiedbyserviceusersforthetraining
programme. Thisneedtounderstandtheprocessofcommitteescamethrough
intheopendiscussionduringthepreliminaryworkshopin2004. Soforexample,
whenaskedwhatwouldhavemadetheexperienceofbeingonacommittee
better,participantsspokeofwantingtogettraininginhowcommitteesrun,how
tochairandhowtobemoreeffectiveonacommittee(Notesfromthe
IntroductoryWorkshop).
Theneedtounderstandhowcommitteesoperategoesbeyondobjective
knowledgeofexplicitstandardrulesandprocedures. Thecommitteemeetingis
atypeofgamewhichoperatesunderarangeoftaken-for-granted,implicitrules
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EqualandInclusiveUserInvolvementintheMentalHealthServicesinIreland
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whichareavitalresourceforeffectiveparticipation. Astrikingexampleisthe
processforgettingdecisionsmadeinone’sfavouratameeting. Oftentimes
suchsuccessdependsonbuildingalliancesamongstcommitteemembers
throughpre-meetinglobbying. Pre-existingrelationshipsbetweencommittee
membersmayfacilitatesuchalliance-building. Noneofthismaybeapparentin
therecordedactionofthemeetingitself;yetcontrolofthemeeting’soutcomes
maysubtlydependonthishiddensocialinteraction. Serviceusersmayenter
intothegameof‘committee’unfamiliarandunawareofthesehiddenprocesses,
andthereforebedisempoweredfromeffectiveparticipation.
Ineverrealisedthatcommitteememberscouldactuallytalkabout
committeemeetingsbeforetheywentintothemeeting. Ithoughtyoujust
wentin…”
(Maleparticipant,aged36)
“I’mstillnotcompletelyaufaitwithhowyougetthingsdoneon
committees,howthingsaredecidedandhowtogetthingsimplemented.
Thosethingsarereallyimportant-thatkindofpracticalknowledge.”
(Femaleleader,aged44)
5.3UnequalPhysicalandMentalResources
Itisironicthat,despiteourbeingphysicalandemotionalbeings,democratic
theoryrarelyreferstothephysicalandmentalcapacitiesrequiredtoparticipate.
Thisblindspotishighlightedthroughtheexperienceofpeoplewithlong-term
mentalhealthdifficulties. Becominganadvocaterequireshavingthephysical
andmentalstaminatoengageinchallengingsocialactivityonaregularbasis.
Itrequireshavingtheabilitytoconcentrateinordertoabsorbcomplex
information. Threeparticipantsandoneleaderspokeaboutthechallengeof
beingabletoconcentrate.
“Ifindalotformyselfthat,workinghard,tryingtounderstand,and
sometimesbecauseoflackofconcentrationorbecauseofmymental
healthconditionIcan’tdoit.”
(Maleleader,aged40)
“Sometimeswe'reaskedtoreviewdocumentsthatmightbealittlebit
heavyreadingandthat'sachallengeaswell,becausesometimesthe
concentrationisn'tverygood,so[thereis] thechallengeofmyillnessas
wellasmyownsetofabilities.”
(Femaleparticipant,aged38)
“IremembersomethingsandIdon’tremembersomethings,andIdon’t
knowhowIremembersome,andnotothers. AndsometimesIfindithard
totakeininformationaswell,youknow.ItjustdependsonwhatformIam
inatthetime.”
(Femaleparticipant,aged47)
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EqualandInclusiveUserInvolvementintheMentalHealthServicesinIreland
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“Because,peoplewithself-experience,theirconcentrationisn'tgreat.”
(Maleparticipant,aged36)
Twoparticipantsspokeaboutthedifficultywithnothavingenoughenergyto
participate.
“Imusttryandrecognisemylimits,andwhenI'mtired,it'stimeformeto
takeabreak. I'mlearningmylimits. Ididn'tknowmylimits.Attheageof
twenty-oneIpersisted….andIeventuallysnapped.”
(Maleparticipant,aged47)
Thestressoftravellingtomeetingswasparticularlyhighlightedasabarrierto
participation:
“AndI’mnotgoingtobeinvolvedbecausenationalcommittees,there’s
justtoomuchworkinvolvedbecausethere’stoomuchtravellingto
Dublin.”
(Maleparticipant,aged36)
“Buttherewasjusttoomanymeetings,andIstoppedgoingtomeetings
forawhile. Itwasjusttoomuchpressureonme.”
(sameparticipantasabove)
“Ittakesanawfullotfrompeopletoattendfromthecountry.”
(Maleparticipant,aged33)
Concernoverstressfromtravelwasalsoidentifiedbythreeofthefiveservice
userleaders.
5.4TheRiskstoHealthfromParticipation
Ifrecoverymeansminimisingstress,thenclearlythereisanextraordinaryneed
tobuildinstructurestominimisestressintheprocessofinvolvement. Yetthree
participants,threeleadersandtwopilotintervieweesexpressedanxietyabout
participation,fromalevelofnervousnesstobeing‘terrified’aboutparticipatingin
asituationwithprofessionals.
Howdidyoufeel?
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EqualandInclusiveUserInvolvementintheMentalHealthServicesinIreland
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“Absolutelyterrified,andthentheguywhowastheclinicaldirectorofthe
serviceandwasalsomyconsultantforyearswasthere,andhedida
double-takewhenIwalkedin.”
(Femaleleader,aged44)
“Youknow,apersonwithmentalhealthdifficulties,wewouldpresentas
quiteokayandquitenormal,butinactualfactinsideit’slikeaduckin
water,we’repaddlingmadly.”
(Maleleader,aged40)
“WhenIstartedgoingtonationalmeetings,Iwasverynervous.”
(Maleleader,aged52)
“Oneofthedifficultieswasthat,Ithinkwhenyouarethereonyourown,I
thinkthere’sacertainlevelofanxiety,youknowwhatImean. There’sa
kindof,moreorless,Imean,again,forpeoplewho’vespentmaybethe
lastfourorfiveyearssteeringawayfromdoctors,youknowwhatImean.
Becausethatcanbecomequiteclaustrophobic.”
(Maleparticipant,aged42)
“Ijustkindoffeltthatitwaslikejumpingintoaswimmingpool,tryingto
keepyourheadabovetheparapet. Again,theanxietyisthere.”
(sameparticipantasabove)
“Okay,buthowdidyoufeelwalkingintothatgroup,andgoingtothefirst
meeting,andthere’stwentypeoplearoundthetable?
Veryverynervous.
Andwhatwereyounervousabout?
Theprofessionals. Imeanoneofthemwasmyownconsultant.”
(Maleparticipant,aged50)
Inadditiontodescribinganxiety,nervousnessandfear,twoparticipantsandtwo
leadersspecificallydescribedparticipationasstressful.
“ItwasstressfulgoinguptoDublin.”
(Maleparticipant,aged36)
“Ithinkactuallythatitisstressful,IwouldagreewiththatandIwould
agreewiththeserviceuserscommentsonthat,butIoftenthinkthatit
wouldbegoodtohaveapersonalassistantoranadvisortohelpyouget
throughtheraftofbureaucracy.“
(Maleleader,aged24)
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EqualandInclusiveUserInvolvementintheMentalHealthServicesinIreland
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“Didyoufinditstressful?”
“Verystressful,butIdidade-briefingafterwardswith_____[support
worker]andthatwasveryhelpful.”
(Femaleleader,aged44)
Ofseriousconcernwerethoseserviceuserswhoindicatedthattheirstresswent
unadressedbytheorganisationwithinwhichtheywereparticipating.
“Yeah,itwasincreasingmystress. Yes.”
“Right. Anddidyoufeelthatyoucouldhavesaidthattothecommittee,to
someoneonthecommittee?”
“Idon'tthinkIcouldhave.”
“No?”
“IthinkIshouldhave,butIjust,Idon'tknowwhatwasholdingmeback.”
“Nooneasked.”
“Nooneasked.No.”
(Maleparticipant,aged36)
Similarly,apilotintervieweedescribedanexperiencewhereshewasamember
ofacommitteeforoverayearwithoutfeelingsheunderstoodwhatwas
happeninginthediscussions. Eventually,thepurposeofthecommitteewas
explainedtoher. Herexperienceofthis,howeverwasthatshefeltcompletely
unsupportedbytheorganisation.
Thesecommentssuggestthatone’smentalhealthcanbeputindangerby
participatingoncommittees. Thereisaneedtobuildinanethicalframeworkfor
userinvolvementthatprotectsserviceusersfromharmintheinvolvement
process.Serviceusershavearighttoparticipateindecision-makingwithoutrisk
totheirphysicalormentalhealth,inthesamewaythatpeoplehavearightto
protectionwhentheyparticipateinresearch. Thesuggestedcontentforthis
ethicalframeworkisdescribedbelowinChapter7.
5.5UnequalSocialResources–Isolation
Anexperiencementionedbyoneparticipant,onepilotintervieweeandtwo
leaderswhohavebeenoncommitteesalreadyisofbeingisolatedwithin
committeemeetings. Serviceusersdescribedsituationsinwhichtheyfelt
markedoutasdifferentfromtheothermembersofthecommitteeduetotheir
EqualandInclusiveUserInvolvementintheMentalHealthServicesinIreland
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beingtheonlyserviceuserpresent. Onepersondescribedbeing“swamped”
throughbeingsooutnumberedbyprofessionals:
“you’dbesittingwithagroupofmaybe15peoplewhichwouldinclude
doctors,nurses,socialworkers,psychologists,andall,andtheyallknew
eachother. Butyouwerekindofcominginasabitofanoutsider,you
knowwhatImean,intoasituation…andlike,tobehonestwithyou,you’re
swamped,you’reswampedinasituationlike,sayforinstance,there’sonly
oneofyouandthere’sfifteen,say[othermembersofthecommittee]-you
knowwhatImean.”
“Uhm,Idon’tknow. IthinkIwaskindofabitswamped. IthinkImoreor
less,IthinkIwasanoutsider.”
(Maleparticipant,aged42)
Aprofessionalmentalhealthadvocateremarked:
SoIlearntalot,butIcanhonestlysaythatafterayearonthatcommitteeI
leftnotknowinganyone.”.
(Femalepilotinterviewee,aged60)
“Thefirstproblemisthenumbersgame,youknow,Ihaveplentyof
confidenceandplentyofknowledgearoundserviceuserissues,butIfind
myselfonadvisorygroupswherewehave,forexample,fourconsultant
psychiatrists,oneserviceuser,onepersonfromtheHSE,oneperson
fromtheDepartmentmaybe. There’saclearimbalanceinfavourofthe
psychiatricprofessionatthemomentwithmentalhealthissues…The
impactisthat,forpeoplewhoneedtolearnabitmoreaboutthemselves
even,andperhapshowtoparticipate,it’sverydifficultforthemunlessthey
alreadyhavethekindofconfidencethatreallytheyneedtobuild.”
(Maleleader,aged52)
Apilotintervieweeraisedtheneedforserviceuserstohavesupport:
“Whentheyinviteserviceuserstothetable,theyneedtogivethem
supportandtraining. ButIthinktherearemanyserviceuserssitting
aroundthetablewithoutbeinggivensupportandtraining.”
(Femalepilotinterviewee,aged60)
Thiswassupportedbyaleaderwhoalsoraisedthedifficultyofnothaving
enoughsupportforherwork:
“Iwouldenjoymoresupport. I’mbasedinanofficewherethereareother
peoplebuttheyaredoingcompletelydifferentwork.”
(Femaleleader,aged 44)
EqualandInclusiveUserInvolvementintheMentalHealthServicesinIreland
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Thebroadersocialisolationthatmanyserviceusersexperienceisalsoa
concern. Itisarticulatedbyaserviceuserleaderwhostated:
“Icanseehowpeoplewithmentalhealthdifficultieshavebeenputinto
thatcategoryofloneroravoided. Avoidanceisabigthingaboutmental
illness.”
“Youmeanpeopleavoidingpeoplewithmentalillness?”
“Yeah,ohyeah.”
(Maleleader,aged40)
Andbyanotherserviceuserleaderwhostated:
“Peopledon’twanttobeassociatedwithmentalhealthserviceusers.
Evenwithsocialevents,itbecomespersonallyuncomfortablytobe
associatedwithserviceusersandnotbeservedadrinkatabarandtold
thatyou’resupposedtobenextdoor.”
(Femaleleader,aged44)
Thesocialisolationwhichpeoplewithadiagnosisofmentalillnessexperience
meansthattheymayenterintothecommitteesituationwithlessemotional
supportthantheprofessionalcommitteemembers. Thisinequalitypointstothe
particularneedtobuildinsocialsupportsformentalhealthserviceuserswhoare
invitedtoparticipateoncommittees. Thetypesofsupportssuggestedbyservice
usersaredefinedbelowinChapter7.
5.6UnequalTimeResources
Timeisanintangibleresourcewhichisoftenignoredindiscussionsofinequality.
Baker,etal.(2004)pointoutthatpeopleneedtohavethetimetobeableto
participate,ifwewanttomovetoamoreparticipatorydemocracy(p.108). Itcan
sometimesbeassumedthatmentalhealthserviceusershaveawealthoftimeto
participateinvoluntaryadvocacyactivity,yettheissueoftimewasraisedbyfour
participantsintheresearchgroup. Twooftheseparticipantsareinfull-timepaid
employment,whileathirdisinpart-timeemployment. Theircommentspointtoa
riskthatserviceuserswhohaverecoveredandareparticipatingfullyinthe
labourforcewillnothaveanopportunitytoparticipate. Baker,etal.(2004)point
outthatthereisaneedforastructuretoenableemployeestobesupportedto
participateindemocracyintermsoftheirtimeinawaysimilartothatallowedfor
juryservice. Evidencefromthisresearchgroupcorroboratestheneedforsuch
structuredsupport. Thisissuealsoarisesforpeoplewithcaringresponsibilities.
Thefourthparticipantwhomentionedtimeasanissuepointedoutthatshewas
sometimesunabletoattendmeetingsduetohercaringresponsibility:
“…thenmypartnersometimes,hesuffersmorewithmoodswingsrather
thanwhatIdo,anduhm,so,therearetimeswhenIdon'tliketoleavehim
EqualandInclusiveUserInvolvementintheMentalHealthServicesinIreland
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alone,andthatwasactuallyonereasonwhyIcouldn'tattendoneofthe
meetings.”
(Femaleparticipant,aged38)
5.7UnequalEconomicResources
Afewparticipantsraisedtheissueofbeingpaidforparticipation:
“Yousee,thisispartofthereason. We’rereallyangry,wherethe
professionalsarelaissezfaire.They’regettingpaid. Andwe’renotgetting
paid!”
(Maleparticipant,aged50)
“Money-tobepaid!! Itcanbebelittlingnottobepaidwheneveryoneelse
aroundthetableisbeingpaidordoingthecommitteeaspartoftheirjob.”
(Notesfromthe1
st
Workshop)
Whenparticipantsarepaidthiscanhaveasignificantimpactontheiroverall
economicsituation:
“Oneofthemainmotivationsinthebeginningformewasthefinancial
incentive. Weweregettingasmallamountofexpenses. Thatwas,tobe
honest,amotivatingfactor,becauseuntilIstartedworkingpart-timeona
C.E.scheme,itwasasignificantportionofmyweeklyincome. Itwasa
bigchunkthatbecameimportant.”
(Femaleleader,aged 44)
5.8UnequalStatus–TheDisadvantageofPrejudice/Stigma
Peoplewithmentalhealthdifficultieslearnearlythatthereissomethingwhich
couldnegativelyimpactonthemcalled“stigma”. Whilesomeparticipants
indicatedtheywouldnothaveanyproblemspeakingabouttheirmentalillnessin
public,sevenparticipants,fourleadersandonepilotintervieweeraisedstigmaas
anissueduringtheirinterview.
“Uhm,everyday,particularlywhenyouhearmediaandwrongusageof
thetermschizophrenic,and,uhm,Ithinkeverybodywhohastheillness
takesalittlebitofthatpersonally,and,uhm,andIhaveschizophrenia,I
haveschizoaffectivedisorder,soeverytimeit'smentionedinthebigbad
worldithasanimpactonme.”
(Femaleparticipant,aged38)
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